Calling Canadians

[iwant2help2]

I was wondering if there was a Canadian organiztion equivalent to the U.S. (I mean strictly Canadian), would any other Canadians be interested in joining the rally for support and help?? I find it very disturbing that there isn't a separate entity for Canadians (considering our size) and I would be willing to pitch in a lot, health willing.:dogrun:

[ICNDonna]

The Canada site is http://canadaic.com/

Donna

[iwant2help2]

Thanks for responding so quickly. Yes I have that address but you see, this site is sponsered by the IC Network which is run by Jill Osborne in Santa Rosa, California. Jill, and her Network are not associated with the ICA (U.S.) in any way.

There used to be an organization called The Interstitial Cystitis Society which was all Canadian and the President was Sandra McNicol of British Columbia. Sadly, they didn't have enough sponsorship and after a few years, ran out of money. Presently, Sandra's health has worsened and so she is not able to volunteer anymore regardless.

Jill Osborne, owns the IC Network which is a FOR profit organization. She puts a line to the few Canadians left who likely belonged to the IC Society (?) not sure, so there is at least something to refer to for support questions which is a good thing.

There is not however, an organization that is made up of, sponsered by, and run by Canadians. There are 4 international groups at the moment: United States, Japan, Germany and the UK - I think those are the correct 4.

I believe that Canada has more than enough patients to stand on its own and we need to get more Canadian research and doctors involved - that is the key for success.

I was just wondering if the few Canadians that show up here would be interested? I know that the U.S. and Germany for sure would be thrilled as there is of course, strength in numbers and we need all the help we can get.:thumbsup:

Please chat any time, prayers for you

[arcticfox]

Thanks Donna!

I didn't even know about this site!

Lynn:hi:

[lalarainbow]

Hi
I go to the Canadian site often but it is not as active as this one. They are a great bunch and helpful though.
In NS there is so little awareness.
~~Pam~~

[iwant2help2]

hi there!

just take a sec to read the message subject "Hi Donna" and tell me what you think, okay?
hug

[iwant2help2]

Me again,

what site is it that you go to exactly?...just curious...

[DebbieB]

Hi; iwant2help2 & arcticfox

I am the Administrator of the Canada IC Resource Center the web site is at http://www.canadaic.com/cgi-bin/ubb/ultimatebb.cgi
you have to registed just like you do on the ICNetwork message board..

Our message board is funded by Jill and we do now have about 278 Registered Members..
It was started over a year ago and it is growing slowly..

So you are welcome to come over and have a visit ..


Debbie

[lalarainbow]

Iwanttohelp,
It is the link that Debbie B has put in her message...
I am satisfied with it and any questions I asked were atleast acknowledge if not answered..It is still growing ...so it is not so active as this board.. I think there are many people with IC in Canade but there is so little awareness out there.. I am thankful that my GP was aware but I am only his second patient with it...
I don't know how I could be of any help or what can be done for more input..
~~Pam~~

[iwant2help2]

Hello everyone and thank you for your prompt replies :)

I have to apologize, I don't make myself very clear sometimes...I'm on very strong medications and often what makes sense to me, well doesn't really make sense...so sorry!

Deb: You said there wasn't very much awareness (in Canda) and I know for sure that's correct where I live! I just don't think it needs to be that way. I have "met" so many intelligent, caring, loving, and supportive women at these sites that it's hard for me to imagine that there is not a CANADIAN NOT FOR PROFIT ORGANIZATION TARGETING AWARENESS, SUPPORT AND THE SEARCH FOR BETTER TREATMENTS AND A CURE!!! (Can you tell I really want to do this??? ha ha ha)

The real thing I was after is this:

I recognize that this Canadian chat/message site was put up for Canadians but as you said, and as Jill told me, it falls under her IC Network which is located in California so although there's a section truly for Canadians, the origins are in the U.S. - which is NOT a bad thing! Thank God for Jill Osborne!

What I really meant was a truly Canadian site (meaning Canadian President, Canadian support via e-mail, group meetings, whatever, a Canadian web-site created for and run by Canadian web-master, have a Canadian newsletter full of Canadian support products/services with Canadian doctors columns and whatnot.

You see, before, when there WAS a Canadian organization (The Interstitial Cystitis Society), the president lived in British Columbia. She's been suffering for decades, her stories are horrific! What a brave soul!! Well, she, as President representing Canadian sufferers of IC, travelled all over Canada doing talks and giving speeches on IC, trying to get more doctors and Urologists involved, trying to get more research money etc. There was a Canadian newsletter printed called "Bladdertalk" that was sent to all Canadian members. As a member, we paid $20 a year and of course we all had access to the web-site, administrators, president, counsellors, we all got the newsletter, we all got e-mailed notices or memos that were important etc.

In short, it was non-profit and served to strive for awareness of this disease, get doctors informed, keep up-to-date on information on new developments, offer counselling, had Canadian doctors (that specialize in IC) that volunteered their time to write articles in the newsletter, distributed the newsletter, rallied for government money for research etc. etc.

This doesn't mean you can't belong to anything else...quite the contrary!! I wouldn't give up my counsellor at the ICA (U.S.) for anything - she literally saved my life! . If I understand what Jill told me, she put this link that we're on right now into place shortly after the Canadian organization dissolved so there would be at least something for Canadians - which obviously is a great and cherished site. :thumbsup:

Anyhoo, after the Canadian chapter folded, I just thought it was such a shame and that we have so many resources that could and should be continually developed (ie. like the informative newsletter for one) and that we shouldn't let the Canadian chapter just die. We CAN get organized to help ourselves and others that much more! In short, we need all the help we can get and if Canada had its own chapter, that would be FIVE countries now all actively participating, trying to do whatever a non-profit organization needs to do to find a cure!! The 4 current countries of course rally in their own country for support and share info and resources between each other and the rest of the world where they can - I just dream of being a part of that!

I've spoken with the Germany President and a "high up" (can't remember her title) in the U.S. chapter (the ICA), and they were very thrilled to bits at the thought of a Canadian Group because of course everyone wants as many countries as possible to become involved to get as much help as we can in fighting this often merciless disease. They offered as much help as needed. :thumbsup:

This is the kind of "organization" that I originally meant to be talking about, not a message or chat site only and I apologize sincerely for the "less then clear" message! : The thought of having a bondafide, registered Canadian Group excites me to no end...I want help and I want to help, and of course be cured as much as anyone, that's what we all want - regardless of where we live.

Hopefully that's more clear...my dream is the full deal, to do whatever it takes to get Canada on the international map and share in what's going on with the others. We have so many talented, supportive people and I know what it's like to live where NOBODY has ever heard of Interstitial Cystitis, and support is non-existent and I just can't accept that. There are just too many patients suffering in Canada and so much brain power in the medical field that I dream of matching the two together with the help of other IC stricken Canadians.

You'll have to excuse my accidental errors, I'm not as young as I was ten minutes ago and with these meds...well my writing is not quite with it somtimes...sorry again...

I love this site and I especially love hearing about other people's courage... please write when you can, prayers to all

[DebbieB]

I am sorry but I think you have me mistaked as Pam that said about the awareness in Canada..

I understand all about it as well I know about the newsletters as I use to get it and then we have problems with the Canadian organization (The Interstitial Cystitis Society)..
Yes it is to bad and I know what you are saying by all means..
I also would like to see that happen but we need lots of help and lots of support in this matter..

I appreciated all the kindness Jill has done for us and she is just a angel to me to give us a site to be able to meet other Canadians...


Hugs, Debbie

[iwant2help2]

Sorry, yes I guess I did mistake your name...my noodle is not so great these days...

I couldn't agree more with this site, it is soooo comforting to say the least to meet other Canadians in the same situation who can truly understand what you are going through. It has been my experience that others can be compassionate, but really don't have a clue how to relate and of course, you don't have an "injury" or anything to show them so it's even harder.

I'm not giving up on the idea of a Canadian chapter. It's great that we can speak and support each other here but more needs to be done. I'm trying really hard to tell myself that somehow, someway I'll figure a way to help. We need to get people other than patients to help out.

We need to get Canadian doctors on the ball. If I had a magic wand this is one thing I would wipe out in a second: the archaic attitude that people suffering in chronic pain should not be prescribed proper pain medications. Oh it's all fine and dandy if you're dying, then you'll get your pain relief but if you want to actually live and function like a normal human being , then too bad, nothing for you. This infuriates me!!:mad: A counsellor in the U.S. and I were discussing this (she has an inbox stuffed full of people in agony who cannot get access to pain medication) and we were silently wishing a bout of IC on all of those insensitive, and often arrogant doctors to see how they could cope with that much pain and nothing to relieve it! If I could leave a real legacy in my life, it would be to erase that scenario from the entire medical profession and that everyone suffering, would be treated properly.

I want there to be people rallying for government money for research, I want Canadian drug companies to be researching also. I want IC to be in the media, no longer a disease that "nobody's ever heard of." I want IC to be a charitable disease where people can donate money to fund research or other good uses. Did you know that right up until the 1980's this disease was defined as a "hysterical women's disease" in all of the doctor/medical journals?? Unimaginable!! (sp?)

I want so much for IC sufferers...and I really don't think my dream is unrealistic. Someone did it before, why can't it be done again? We can learn from past mistakes, get help from groups already successfully up and running and get organized, and to steal from Nike, "Just Do It!! "

So I keep on reading and talking to others and such but I don't have a lot of information. When I can figure out how to approach this, I only pray that there will be someone who might be willing to help for everyone's benefit. I pray, I pray, I pray!

Write again Deb, it's nice to hear from you. Take very good care of yourself, xo

[iwant2help2]

Quick one...

I forgot. Thank you very much for sending me that other link that you administrate for. I visited and enjoyed as well. I need practise getting around in these "rooms" though...tee hee

take care :kiss:

[feelsalone]

To Iwant2help2,

I'm with you on this one. I'm still not getting out much but I am more than willing to help out in any capacity from here.

Keep rallying for this. It sounds like you can get this done, if you continue on!! I'm with you!!

[SharonA]

feelsalone...I am so sorry, but the thread you replied to is very old. iwant2help2 has not been on the boards since 7/11/2004.